Penn State Prof's New App Would Give Study Participants Control Over Their Data

A professor at Pennsylvania
State University is working on a
plan to protect study participants' data and make it available for
researchers
at the same time.

Human Development and Family Studies Assistant
Professor
Timothy Brick's system, called Maintained Individual Data,
Distributed
Likelihood Evaluation (MIDDLE), would limit data given to researchers,
but allow
them to use it to make statistical models.

In a traditional research study, participants
volunteer their
time, complete whatever activities they are required to and then pass on
the
information about themselves to researchers — who do whatever they want
with
it.

Using the example of study participants recording
their
emotions each day in relation to how much exercise they get, typically,
by
using something like a Fitbit, they would record their physical activity
for a
day and then record their emotional moods, using some kind of scale.

With MIDDLE, the information would go to a private data
store
that only the participant would have access to. Then, for example, at
the end
of the week, researchers would send out different "models" and ask the
participants to use an app to choose themselves which one best fits
their data.

The information the participant supplies via the app
tells the
researcher how accurate the model is based on the participant's
responses,
allowing him or her to further refine its estimates and update the
models.

Researchers would never see how much participants
exercised,
or what their moods were, but they would have the information they need
to make
judgments about it.

Noting that one of the first concerns with the new
MIDDLE system
might be that participants may not accurately report results, Brick said
that
has always been an issue.

"Yes, for this to work, you have to trust people,"
Brick said, "but we do that anyway."

The app is still in development but, along with
reporting
research study results, it will also allow potential participants to use
their
smartphones to pick and choose what studies they might be interested in
participating in. It would also allow them to end their participation by
simply
clicking a button. At the same time, it would allow researchers to
easily stop
the study early if they have enough information.

About the Author

Michael Hart is a Los Angeles-based freelance writer and the former executive editor of THE Journal.